Beauty Marks & Babies - What is a hemangioma?
I am SO excited to share this post with you. I have teamed up with a friend of mine Caroline and we are here to talk all about our baby girls’ beauty marks. Caroline and I have known each other since our high school days and both recently had little girls. Other than the girls moms being Fontbonne Academy Alumni, they have another big thing in common. Both girls developed hemangiomas after they were born. When Caroline reached out to me about doing a blog post about the girls hemangiomas, I was so excited with the idea. I realized I would be able to share with everyone, probably what they have been thinking, what is that thing on Amelia’s ear. That thing is a hemangioma.
Taken straight from the mayo clinic website, here's the definition of what a hemangioma is: ”A hemangioma (he-man-jee-O-muh) is a bright red birthmark that shows up at birth or in the first or second week of life. It looks like a rubbery bump and is made up of extra blood vessels in the skin. A hemangioma can occur anywhere on the body, but most commonly appears on the face, scalp, chest or back. Treatment for a baby's hemangioma (infantile hemangioma) usually isn't needed as it fades over time. A child who has this condition during infancy usually has little visible trace of the growth by age 10. You may want to consider treatment if a hemangioma interferes with seeing, breathing or other functions.”
Both Grace and Amelia have hemangiomas in different locations. Amelia’s is four bumps located on her left ear. Grace’s is both superficial and deep (meaning part of the hemangioma is on top of her skin and part is underneath). Hers is located on the left side of her face next to her left eye down the side of her nose.
I put together a few questions and had Caroline and myself answer them, to fill you in and hopefully educate others on hemangiomas and what they are.
When did you notice the hemangioma and what did you do?
Ashley - We noticed about a month after Amelia was born, four little bumps behind her ear. We showed the doctor at her next visit and she let us know what it was. From there we were sent to see a dermatologist at Boston Children's Hospital
Caroline- We noticed what looked like a scratch on Grace’s face about 4 days after she was born. It gradually got darker and larger quickly over the next several weeks. We were referred to a dermatologist at Children’s Hospital of Wisconsin.
What have you done?
Ashley - We booked an appointment to see a dermatologist at Boston Children's Hospital and saw them about every other month. Amelia was given a topical ointment to use but we did not see much change. Hemangiomas will eventually fade and get smaller, but because of the location and size of Amelia’s, she will need to have surgery regardless, even if the ointment worked. We were given the option to have her take an oral medication as well, to see if that would help, but because she will still need surgery, we decided we would not have her take it.
Caroline: We saw the dermatologist at Children’s of Wisconsin when Grace was 7 weeks old. She was concerned immediately at the location of the Hemangioma and also how quickly it was growing. Because of this she needed to rule Grace out for PHACE syndrome, a more serious condition where Hemangiomas can be located on different locations internally including the heart and brain. Grace needed an ultrasound of her heart (Echo) and an MRI of her head and neck. Both tests came back normal which was great news! The doctor suggested we start Propranolol an oral medication usually used for high blood pressure in adults. It has been shown to decrease the size and growth of Hemangiomas in infants. We started this medication and have had great results.
Does it hurt, can the girls feel it? -
Ashley - Absolutely not! Only once did we have an issue with Amelias where it bled a little. It is so important to keep the area from getting dry because the skin can crack and bleed a bit. Because we need to keep the area well hydrated, we use Mustela products that are specific for babies like the Hydra Bebe Body Lotion and Facial Cream. The lotion is formulated with plant based ingredients and perfectly safe for Amelia’s skin. I do get worried sometimes taking her clothes on and off because it's just another thing to get caught on but am always cautious and I am sure it's not really an issue.
Caroline - Grace’s facial hemangioma does not seem to bother her at all! We were a bit concerned about her breathing because at first it was narrowing her left nostril. However as the weeks went by and the medicine kicked in, the deep hemangioma (the part under her skin) got smaller and her nostril opened up.
What will happen? -
Ashley - Amelia will need surgery because of the size of the hemangiomas. With time, her bumps will fade and get smaller but surgery will still be required. The doctors suggested we wait to have surgery until she starts school. Her hemangioma should not be growing anymore but her ears will, so we will do it in a few years. This will make sure they take off the right amount and fix the ear as best as possible. We were told no matter what, her ear will look a little different but she will have hair that will cover it.
Caroline- Grace has been on the Propranolol medication since 7 weeks old. She will remain on it until she is between 12 and 15 months (she is 9 months old now). Her Hemangioma has gotten remarkably smaller and will likely go away completely over the next couple of years. Grace may need some laser treatments to get rid of small parts that don’t go away with medicine and time .
Things people have said: -
Ashley - The most common thing we get is “awe look at her earrings” and then they realize that there is only one and it's not an earring. Once a little girl at the park volunteered to help find her other earring that she must have misplaced. There are always the children that do not know better and say it is weird including “what is that creepy thing”. Most questions are usually just asking what it is, does it hurt, and will it go away.
Caroline- Because Grace’s Hemangioma is so visible people ask and say things about it all the time. Little kids usually ask if it’s blood or how she got her cut.
I explain that it is a birthmark or if it’s a really little kid I will say “it’s an angel kiss!” and they usually enjoy that answer.
Adults have had interesting remarks such as “What is wrong with her?!” Or “Did she get hit in the face??” It used to bother my husband and I but over time we just learned to smile and say it’s a birthmark!
What it has taught you as a parent? -
Ashley - When I first saw the hemangioma I was scared because I did not know what it was, but once we learned more about it and knew there was no harm, I was completely fine. The questions from people never bothered me and what they said were never something that I really cared about. The only time I got upset was when I left the plastic surgeon knowing it would be a few years before it would be removed, I am not sure why I was upset but I just felt bad that she had to go through all of this. I also know, I now look at people with birthmarks differently. I think of what they have gone through, what people have said to them and know they did not ask for that. We had no idea when I was pregnant that Amelia would have this, heck it was not even there when she was born. I still think she's the most perfect, beautiful baby in the world and her hemangioma makes her who she is. I actually think I will miss it when its gone, it's been there since almost the day she was born and makes her even more unique.
Caroline- Grace’s hemangioma has taught me that as long as Grace is a happy, healthy baby, I could care less if she has a big birthmark on her face! Having to go to Children’s hospital so frequently and seeing babies who were very, very sick, I realized that a birthmark is such a small problem to have in comparison with the horrible things some of those other babies were going through.
Do you care when people ask you about it?
Ashley - I do not mind when people ask about it at all, it is apart of her and who she is. I also feel a connection to someone when they know what it is and want to share that either they had one or know someone else who did. For example, Caroline and I would of course be messaging each other on instagram saying how cute each others babies are, but the hemangiomas brought it to another level. We were able to message and discuss what we were doing to take care of it and also what people have said to us.
Caroline- I completely agree with Ashley! I don’t mind at all when people ask me about it. It’s very much a part of her and would be awkward at times if people acted like it wasn’t there. It is really nice to have Ashley to talk to about our girls Hemangiomas and helps to have someone going through something similar to talk to about it!
A part of having the girls having hemangiomas, we are encouraged to keep the area moisturized and well kept. We partnered with Mustela on this post and they kindly sent us over some incredible products to try out. These products are now some of both our favorites because not only do they work amazing, they are made from plant based ingredients. It is crucial for us to trust in what we put on our girls, and these products are a great choice!
I hope you all loved this post as much as Caroline and I loved writing it. We also hope this has helped educate someone on what a hemgioma is and we would love to hear if you had one or if your child did!